You know when you buy a car and then all of a sudden you notice that everyone around you has the same car or is talking about the same car you just bought? Or maybe you hear a word you don’t typically hear in everyday conversation and then you hear it repeatedly in various conversations over the coming weeks? That is exactly what has been happening with the topic of advocating for your needs with medical professionals.
A few weeks ago I started to think about what I would write for this month’s blog post and the idea of helping caregivers better understand how to advocate for themselves and their loved one’s needs when working with doctors or other professionals came to mind. Once I decided that this would be the focus of the post I started hearing about it everywhere and the conversation varied from people feeling better after they advocated for themselves, feeling unsure about how to advocate, and being frustrated when their advocacy was not received well.
Advocacy is a big topic. It can be focused on what you need or it can be advocating on the behalf of others. Advocacy can happen on a one-on-one level like at a doctor’s appointment or with another family member, or it can be larger scale advocacy with policy makers and legislators. For the purpose of today’s post I am going to talk about advocating on a one-on-one basis and either behalf of yourself or someone you care for directly.
The truth of the matter is that advocacy, like most things, takes practice and can be uncomfortable to start with. Sometimes advocating on behalf of someone you care for aligns with what your needs or preferences are and sometimes it doesn’t. The times where it doesn’t align can be extra tricky to navigate because you have to balance out what you want and what your loved one wants with what a third party, perhaps a doctor, is recommending.
As a caregiver it is likely that part of your responsibilities include attending various appointments with your loved one. You often carry the full picture of their care including their diagnoses, medications, side effect history, schedule, preferences, and you understand their and your abilities and habits. When you have all of this information it sets a foundation for you to better understand how the medical recommendations of professionals either do or don’t align with the needs of you and your loved one. You are the expert on your situation. Doctors, nurses, therapists, and other professionals that you see hold a different set of information and experience. They are the experts in diagnosis, treatment protocols, and triaging concerns. Advocacy is figuring out how to best blend these two areas of expertise into a treatment plan that will work for everyone involved. I am by no means suggesting that you deep dive into WebMD and come into an appointment with a 32 point strategy of how to treat a complicated medical issue based on internet research. No, there is a need to trust the professionals who are well trained and give you medical recommendations. If you don’t trust the professionals you are working with, you probably need to change up the care team so you (and your loved one) can trust in their expertise.
Before I jump into tips and strategies to advocate for yourself, I want to acknowledge that depending on your cultural identity the idea of pushing back against a doctor or other medical professional may be out of the question. If you find yourself in a situation where you have been taught to trust the advice and recommendations of doctors without a second thought and you aren’t interested in changing that right now I understand. My recommendation to you would be to make sure that you are choosing providers that align with your care philosophy and general perspective on treatment.
Advocacy is asking for what you need in order to best carry out the recommendations of the professionals you trust. It is telling them if you don’t think something will work well given factors they may not be privy to or explaining to them if a recommendation goes against the wishes of your loved one. This is especially true if your loved one is unable to participate in their own care. So how do you advocate?

Here are 5 tips for how to handle this:
- Stay kind and respectful but firm
You are asking for help to adjust the plan to better meet your needs and the needs of your loved one. We all know the saying you catch more bees with honey than vinegar, and it’s true. You can be clear and kind in your communication. If you feel yourself getting frustrated or reacting out of anger or fear know that you can take a break and ask for a few minutes to weigh your options or discuss with your loved one.
- Ground yourself and center on the needs of your loved one
As said before you are the expert in what you need and the needs of your loved one. Trust in this expertise and focus on your overarching goals in providing care. In addition to thinking about the needs of your loved one, it is important to also think about what is realistic for you as the caregiver. It won’t do anyone any good if you agree to something that can’t actually be done.
3️. Start with your request, follow up with rationale for what is needed, and reiterate your request.
If a provider is making a recommendation that doesn’t align with the wishes of your loved one or your philosophy on care, you can ask for other options. Ask questions about if there are other strategies to get to the same outcome. Are there less invasive options, different medications, or creative solutions that could be used instead. If you have something in mind, say it. If you have a suggestion it doesn’t hurt to talk about it with the doctor. Be clear in what you are thinking and why you think it would be helpful.
Ultimately you may not be able to control what the provider does, but you can request your perspective be included in the patient record, ask for justification of their decision, and agree on a plan if the recommended course of treatment doesn’t work out.
- Recognize when you are at capacity.
Appointments are a lot. Especially if you have several in one day. It can be a lot not only for your brain to digest, but also for you emotionally. If you feel yourself disengaging or shutting down, request some time to reset. You can tell a nurse or a provider that you are feeling overwhelmed by all of the information and, if needed, ask to reschedule or shift conversations to another day.
One of my favorite podcasts just talked about this in an episode. One of the hosts, Abby, has a son with Down syndrome and she talked about their annual appointment day and all the feelings, thoughts, and overwhelm that accompanied those appointments. She also talked about saying “no” when another person wanted to give her more information. She knew she wasn’t in a place to hear it and advocated for herself. And she did something else which brings me to tip number 5…
- Give feedback.
We all get those surveys after appointments where they want to know about your experience. If you can, take the time to fill those out and offer honest feedback, but also know that you can offer feedback directly to the nurses or other clinic personnel. Most people go into the medical field to help and support people through challenges. They want your experience and care to be as easy and stress free as possible. So, gather your thoughts and give them feedback.
We know that advocating for your needs can be stressful and scary. I’ve been on the provider’s side of a family asking for something other than what I was recommending and initially I was a bit surprised, but they knew what they needed and explained why. We adjusted course and, guess what, they were right! Trust in yourself. Trust in your expertise. You know what you and your loved one need.
Have you successfully advocated for your loved one or yourself? We want to hear from you so we can celebrate your success! Send us an email!